Along A nurses thoughtsand feelings about her terminally ill dad.....

  1. Along A Jetty

    Caravanning single file over a roughly hewn stone breakwater, mom, dad and I embark on a journey in my dreams.

    Unaffected by the waves slapping against the sides in a timeless hypnotic rhythm, we continue onward on some mysterious journey my mind has chosen to make me aware we must absolutely take. I am warm. I am content. I am happy. What I am NOT, is afraid.

    In serpentine-like slow motion, we follow dad into vignette like shadows of dusk on a winding path atop the breakwater toward the setting sun. The air is clean and a light breeze kisses my neck as tepid wind whirls tumble past. I am acutely aware of the sea salt marshy scent, and the hauntingly comfortable sound of a far distant foghorn. The setting suns' reflection tosses silvery pink orange shards of light our way.

    I remember as a little girl feeling so safe, warm and protected by daddy. All those things I feel in my dream. Strolling one behind the other, encompassed by the magnificent surroundings, I follow my parents along the jetty.

    We come to a full stop like ancient mariners surveying far away destinations. Dad turns to face my mother and I. He pauses briefly, meeting our eyes with his, then raises his hand in a silent wave. In this mind travel I am not confused; simply puzzled. Mom and I are now side by side. Dad mouths a silent goodbye. His beatific smile warms my heart and I am neither sad nor surprised when he turns to continue on toward the sunset. Mom and I clasp hands and watch him walk away until all we can see is the sweetly descending star flecked night sky. All I can think is that we will both be ok and he is safe. I love you dad.

    When I awoke the next morning I felt strangely peaceful. I couldn't recall the last time I was so relaxed and stress free. Often dreams slip by and fade to some long lost memory place. Too many times, they are lost forever. THIS dream imprinted vividly in my mind and I knew I would never lose it. I immediately went downstairs to share the dream details with my husband. I knew I would write about it someday but instinctively was certain then was not the right time.

    Not long afterward, my parents gathered us together to share that dad had been diagnosed with an essentially terminal illness. Though long a nurse, I had never heard of it. Or, perhaps I simply blanked that from my mind.

    Pulmonary Fibrosis is an incurable lung disease. I imagined it was a diagnosis by some doctor who couldn't come up with other answers. Dad was never one to go against a medical opinion and I was never one to blindly accept one. Still, just hearing the words struck like a gust of hurricane magnificent unpredictable might. I didn't cry. I almost did, but just as dad attempted to teach me time and time again big girls don't cry. Well, I am most certainly big and I am a girl. Sorry dad, sometimes it just happens.

    Keeping in mind my dream, I tried to adjust to the idea that dad was living on borrowed time. I told myself we are all doing that but it didn't help. This was my DAD, after all.

    I am a wordsmith so I tried to trick myself with words, ideas and thoughts. Anything to help me deal with the eventual demise of my father. The computer reminds me that the last sentence is a fragmented thought. That is exactly how I have been feeling; fragmented.

    Some part of me knows that I am simply ticked at having to face the eventuality that dad will no longer be present in the world. Still, it shouldn't be about me. But it is. I hate that about this situation. I hate the entire idea but on some level I know that a message was sent to me via that dream to show me that everything will be ok. It is the getting from here to there, which is the culprit.

    On our current journey from life to death there have been some significant obstacles. Recently my husband, who suffered a heart attack several years ago at age 37, spent nearly eight hours in pain before by some miraculous coincidence, I was compelled to go downstairs and check on him. We called my mom to watch our children and sped to the hospital, where he was admitted. I was ticked off and that shocked me. I was actually pissed. How in the world could he wait so long to let me know of his discomfort considering his history? How could I be angry? Shouldn't I feel relieved? How AM I supposed to feel these days?

    In the morning I drove home to spell mom and wait for my husband to complete his stress test. Thankfully, all was well. A false alarm is a wonderful thing. Just as my three children and I left to pick up my husband, mom called to inform me that dad was having difficulty breathing. She didn't ask but I knew she wanted me to come over and check on him. She didn't have to ask. I was on my way.

    Dad refused to go to the hospital. Mom and my terrified brother didn't want to upset him any further. Mom said the doctor was already waiting at the emergency room and it was a weekend so he had been called in from home. Big deal I thought to myself. Who cares how inconvenienced the DOCTOR is? In a futile attempt to temper my daughter status with the nurse component, I failed miserable and burst in to tears, fatigue and fear besting my professional demeanor.

    "Please dad," "Please go to the hospital." Knowing all about the fear factor and denial did not change the fact that ultimately, he was plain and simply my dad.

    Dad said he couldn't possibly go without taking a shower. My brother attempted some levity by telling him that all patients probably smell like old goats. Then, dad had to have a special shirt to wear, one with the names of all his children and grandchildren. Exhausted and upset from being awake after a grueling several night shifts and a husband still at the hospital, I remember thinking "His Orneriness" still had some vim and vigor. In the driveway supported by my brother and me, dad collapsed and asked for an ambulance. We picked him up and put him in the car where our amazingly strong mom was poised in the drivers' seat. That was the moment there was an actual almost palpable shift from parent to child. It was unnerving. It was also the first time I permitted myself to see the frailty and acknowledge the inevitable.

    The nurse in me took over as I designated my shell shocked brother to go with mom and dad to the hospital as my children and I followed. He resisted so I reminded him if God forbid something happened and mom had to pull over, I could go over to help out and he could watch the children. It never occurred to me to linger on the thought that I might have to revive my father. Thank goodness for the automatic pilot thinking years of nursing impresses upon you.

    At the hospital the same group of admitting people and ER staff did a double take as I picked up my husband and checked my dad in. There were jokes about family discounts. It was truly a surreal day all around.

    The most difficult part of the entire scenario is that it is so difficult to watch. The changes are insidious. There are good days and bad nights and vice versa. You think you are prepared and then there is a modicum of recovery. Relief is always tempered with fright. It seems a never-ending battle between subtle and obvious. The entire process is unforgiving.

    How can I have saved so many lives, continually participate in endless scenarios of life and death and STILL not be able to save my dad? Who the heck am I to even think I could? And how come I CAN'T? God, on that humorously poignant journey you have sent me on throughout my life have you noticed that I am no longer laughing?

    Ironically and thankfully, the only person in the family who is ok with the eventual outcome is dad. Lately amidst the emotional highs and lows that accompany me wherever I go, that fact is soothing.

    I can no longer watch the "Lion King" without silently cursing the song "The Circle of Life." It kind of cracks me up sometimes that it's so, but it's true. Currently I am not too thrilled with the damn circle of life. I hate that it just shows up at your door with no intention of knocking, breaks down same door, barges in and knocks you on your ***.

    Yesterday while sitting on the beach basking in the crisp new spring sun, I could equate the panoramic view of the beach and ocean to the cavalcade of emotions I have been experiencing. Windy whitecaps, gently heaving swells, smooth banks of sand interspersed with trash-strewn spots. The sea tells stories in every lick of spray; the shore in every grain of sand.

    I catch myself looking at people who have recently lost a parent. I notice how they act and what they talk about. Sometimes I flash back to a time when my grandmother was confused and no longer recognized me. I remember how sad and lost I felt. Will that happen with MY dad? Will he forget who I am or how much I loved him? Why am I the only one who gets teary without notice? AM I the only one? Or, am I just not as good as I used to be about it? Why why why ? I hate to admit it but the real question in my mind is when when when?

    Sometimes in posing the questions I feel like the most selfish daughter in the world.

    When I think of my dad I don't necessarily remember a pristine childhood. He could be a real pain in the neck. He was always there for me though. He still is. How in the world am I going to deal with visiting gramma without grampa? How am I going to tell my little ones what actually happens when the time comes? And to my oldest who is a beautiful, smart sweet young man fairly raised by grampa as a father figure, how in the world am I going to help him through it when I am feeling so helpless myself? Will my babies remember grampa? Will I forget what he looks like? I can't remember what MY grandpas look like unless I peruse a photograph.

    My daughter tells me each star is a person who went to heaven. I think so too even though science tells me that can't possibly be true. She tells me that she believes there are spirits up with God who someday travel back to Earth as babies. She is convinced that is why I am a maternity nurse; so I can help them find their families. She wonders if grampa will come back as a baby. Part of me shudders at the thought and thinks of the jokes he would make at that. Part of me secretly hopes it is true.

    Our five year old son sees God, so he tells me. He thinks that grampa will be ok and just on the other of the wind. I am told that we will be sad but we should also be happy that God loves grampa so much that He would take him back to Heaven. "Besides," "we all will be together someday mom." The three year old tells me that grampa, who has to walk with a cane and wear oxygen continuously, will be able to rock and roll in Heaven. Oh, if only that was true...

    I kiss the children and ask the Angels to watch over them. I guess part of the reason I have done a decent job with my children is because dad and mom have done a decent job raising me. It has been a totally bumpy ride with a couple of smooth spots along the way. I suppose this is simply part of the life continuum and while I know I have to accept it, no where is it written that I have to like it.

    See, it IS about me. This is MY dad. When my children are sick, I tell them the same thing he always told me. "I wish I could take all the hurt out of you and put it in me." He would gently stroke my hair and temples while saying that and I always felt better. For the first time ever in my life, that is exactly what I wanted to say to him.

    And I couldn't help.

    I am frightened that the best of my ability just isn't and won't be good enough. Did I make him as proud of me as I always was of him? Does he REALLY know how very much I love him? He would say yes but does he? Will he always know that even though I am an adult I will forever be his little girl? The one clothed in a red corduroy jacket? Martha Jean the Benjo Queen.....

    In the Cinderella song "Bippity Boppity Boo", will he ever forget that I am Bippity? How about that time on Martha's Vineyard on a father daughter day? Will he remember the day was so vividly beautiful that I have not ever experienced one even remotely as special?

    I might no longer fit into his pocket as the story used to go, but I count myself fortunate and blessed that I will always be in his heart. Who knew my husband would tell the exact same pocket story to our daughter before ever knowing that dad used to claim to carry her mother around like that?

    I just wish I wasn't so sad or angry. But, I suppose the ability to feel such a multitude of emotions is, despite their discomfort, a good thing. This is just the beginning to many phases. A turn of the tide, as it were.

    I have been thinking so hard and so long that I am totally exhausted. Sleep eludes me but I trust my dreams. I trust that dad is accepting of what is to come and that consoles me. Whatever the reason or etiology of my dream of the three of us calmly negotiating the jetty, it remains comforting to me that all was peaceful and calm.

    Thank you dad and thank you God for dropping me into this family, which includes so many significantly special people, both by birth and by chance. I am still not at all thrilled that the circle of life has spun us to the point we now find ourselves but I can surely say I remain grateful for the spinning.

    Dad always made a point to tell us NOT to say goodbye in case we didn't see each other again. That way there would never be goodbye. He felt it was too final. So long implies we will be together someday. Even though this time there will be a definitive farewell, I am reminded it is simply a transition from this world to the next. That said, so long for now dad. I will see you soon, and later down the line, in my dreams as you promised. (And don't you DARE goose me!)

    I love you dad. Thank you so much for our amazing moment in time...

    Written with love for Robert Blair Crowninshield

    By his daughter Martha J. Crowninshield O'Brien

    April 7, 2004
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  3. by   jnette
    A beautiful tribute. (((HUGS))) Hang onto that dream, for it was meant to give you peace during the trials ahead.... the peace is there, even while the storm rages about you.. seek it out, and hold onto it.
  4. by   Roland
    This is how I comforted myself when my father, and then mother were dying. My logic went something like this:

    1. IF, there is eternal life (at least in SOME) real form then the death of our physical bodies isn't such a bad thing. In fact it may represent a good thing (which is still painful kind of like a relationship which you know is wrong for you ends, but you still care for the person anyway).

    2. On the other hand if the atheists are correct and there is nothing beyond this material world. Well, then we are all pretty much equally screXXX! IF they are correct then it really doesn't matter if we live for fifteen years or one hundred and fifty! After all did the people who were on the Titanic at the end of the boat (and thus had a few more minutes compared to the people trapped below) really feel that much better about their situation? No, they didn't, because they knew what their fate was, and it wasn't good.
    Now, with that said, I truly believe that the "materialists" are wrong. If even ONE of the MILLIONS of stories of ghosts, miracles, angles, devils, OBE's ect. has objective reality then the "materialists" must be wrong (since their reality doesn't allow for the non physical). That's how I dealt with the loss of my parents.

    You might also consider investigating alternative and CAM medicine approaches to your father's condition. Some of these have little evidence for their efficacy, however other's have considerable (albeit inadequate for FDA approval). One good place to start is they are a group of M.D's and PhD's who believe in "translational medicine" which is to say bringing the latest discoveries to clinical practice as quickly as possible (with the understanding that this increases the risk of certain appoaches not being effective or even harmful). I question their objectivity because they also sell supplements, but given the controversial nature of what they do it's one of the few ways to obtain funding. My thinking is that is conventional medicine is 100% percent sure (or virtually so) that they can't help, then it makes sense to at least TRY and go out of the box (as was the case with my mother's stage IV NSLC). Unfortunately, in her case she wouldn't even consider vitamins, exercise, massage, or prayer anything the least bit outside her oncologist's ultra conservative "box" (despite the fact that their is good evidence for some of these approaches improving or prolonging survival and quality of life).
  5. by   oceanblue
    That was a beautiful &touching tribute to your dad.
  6. by   VivaLasViejas
    That was one of the most beautiful tributes I've ever read, Martha. It brought back memories of my own father and the conflicting emotions that went with his terminal diagnosis (he had oat-cell CA that spread like wildfire---it was only six weeks from diagnosis to death). I was only 26 at the time, pregnant with my third child, and I remember being sooooo confused; who was I supposed to be, if not my father's daughter? Yes, I was a wife and mother, but I was so young, and I still saw myself more as belonging to my family of origin.......and there wasn't time enough to get used to the idea of no longer being Daddy's little girl.

    However, in the wee hours of the morning of his funeral, Daddy came to visit me, and to this day I'm not at all sure it was a dream. I saw him as he had been at the happiest time of his life, not the skeleton he'd been at the end; he was sitting on the edge of my bed, and he spoke to me just as he used to in life.........He told me that he wasn't sick any more, he was having a good time ("even though they don't let me cuss up here"), but that he wanted me to look after Mother, because he knew she wasn't going to do well without him and it wasn't time for her to join him. (Sure enough, she fell into depression and after four years of struggling against it, she followed him in death.) He also told me I was the strongest member of the family even though I was the youngest, and that he trusted me to see that the family went on.........the funny thing was, he'd never been told about my pregnancy, and yet he knew.

    That was 19 years ago, and since then I've never been afraid of dying because I know there's something better waiting for us. I've never again been "visited" by my father, or any of my other loved ones gone before, but it's not necessary.......I learned what was intended for me to know, and the years that have ensued only strengthened my conviction that we do have guardian angels. Martha, for what it's worth, I feel that your father will be yours, and even though this journey will be very, very difficult for you, you will come out on the other side intact. You have wisdom and compassion, as your writings demonstrate so well, and you will grow even stronger in these virtues as you progress through it. May God keep you and yours in His comforting arms, and please keep sharing your feelings with your "siblings" here at allnurses.
  7. by   leslie :-D

    you truly have the gift of expression as well as a sensitively profound insight into the human soul. i remember very shortly after my grandfather died, he came to me in a 'dream' (not) and touched my face. i could feel the warmth of his hand but couldn't feel his flesh. he told me that he was finally with grandma and that he will always be with me. i also lost my daughter when she was 6 yrs. old (many years ago) but our relationship is gut wrenchingly personal and do not share it with anyone, but we still communicate. you indicated that your dad was the only one ok with this: i think he's telling you that he is ready for this journey....share it with him until his end. i truly feel your anguish, but with the insight you have shared with us, you will be ok. may peace follow you and your family.
  8. by   Mermaid4
    Thank you.....I love you all....
  9. by   Mermaid4
    I am sitting here in tears remembering my dad because he eventually was so ill he couldn't do anything and died at 0945 at home with my mom , myself and my husband there. I still forget and go in to the room "to say hi" to him. It is so difficult but I am glad he is no longer suffering. I am so grateful he was able to read this tribute before he died and thank you to God for giving me that amazing dream in the first place....Martha
  10. by   SharonH, RN
    Well my goodness, I am reading this with tears in my eyes. You certainly struck a chord with this daughter and captured that relationship so well. Thank you for posting this.
  11. by   P_RN
    Daddy passed away in 1988. I still dream of him and talk with him often.
    Your tribute spoke to me in a wonderful way.
    Thank you.
  12. by   Blackcat99
    Thanks so much. What a beautiful tribute to your dad! It brought tears to my eyes. My Dad left this planet on Oct.9,2002. I''m glad my dad is no longer suffering but oh how I miss being "Daddy's girl."
  13. by   Mermaid4
    i miss that too. i hope dad comes to me in my dreams or any fashion he would like. in the first few days i found myself hearing his voice in my head the way he used to answer the phone, "hi honey"....his funeral was beautiful despite the pouring rain ( a friend told me even god has to weep) with full military honors, a bugler playing taps and 21 gun salute so he would have loved it. at the memorial service all four of my brothers, myself and our children spoke. i hope you don't mind if i share what i wrote with you. because i had already written "along a jetty" and shared it with dad, i did not write anything extremely deep and wanted to concentrate on the laughter and ability of my dad to accept both laughter and is what i had to say...thank you so much for sharing all your thoughts and experiences with me. i still feel the rawness sometimes and in the beginning, would go over to check on dad even though he wasn't there....

    i wondered if i should even try to stand up here and deliver a talk about my dad. more than anything in the world i wish i didn’t have to admit that everything about him is now pastense. mom wondered if i could make it through without any tears because she knows me so well. here is the thing about tears though…they are supposed to happen and no one knew that better than dad.
    toward the end of his life, i would be visiting him and sneak in as he slept. sometimes it would strike me that as a child he was the one who always checked on us. i remember many times when he would tell me how beautiful my christopher was when he was sleeping; that he often just sat by his side and watched him slumber. i don’t know if dad ever knew that i tried very hard to stay awake as a little girl because it made me feel so safe knowing he was there.
    in september i could see the decline and knew it was getting more difficult for him. on one dreary afternoon i stopped by and sat by his side watching him struggle to breathe. when he awoke he was happy to see me and noticed the tears i thought i had hidden from him. he asked me if i was sad and when i admitted that i was, he stroked my arm and sang to me. always a dad….
    he didn’t like me to cry around him. in fact on the afternoon before he died, he told me he wanted to rest and essentially kicked me out of his room. banished to the living room i heard him call for me and then say, “martha jean, you aren’t weeping, are you?” of course i fibbed and told him i had a cold. of course he saw right through that.
    there wasn’t much if anything that i could put past barnacle bob. somehow he always managed to figure out what i was up to. as a teenager i was convinced that when he told me to be on my best behavior because he knew everyone in town and they would report back directly to him, it was absolutely true. what i didn’t know was that all four brothers and most of their friends had been enlisted into that conspiracy so much so that i don’t believe i ever had a date in high school. everyone was afraid to approach me. thanks to dad, but i get that considering my husband has informed me that our daughter will not be dating until she’s forty-five.
    dad gave me the gift of believing i could do whatever i set my sights on. in taiwan at the ripe old age of nine or ten i thought i was pretty important exploring the mountain by our home. i investigated an old beautiful estate inhabited by an elderly english woman who invited me frequently for tea. i had no idea until years later that not only had dad followed me on all of those occasions, but had met with the woman, spoken to her and enlisted her aid in keeping an eye on me and reporting back to him. then and now with my own children, i learned that one of the greatest gifts a parent can give a child is at least the presumption that they own the world by allowing them to explore and experience new things. no where is it written does the parent have to admit to keeping an eye on them.
    the other day before sending chris back to college i insisted that he call me when he arrived. i strongly suggested that he leave earlier than he had planned and added an emphatic “be careful.” although the poor man is 23 years old i have to admit that i still think it’s special that my own dad even shortly before he died still took that approach with me. hey, the apple doesn’t fall far from the tree.
    on the morning of thanksgiving eve after work, i was at the christmas tree shop trying to get on with things and walked by a stand of little angels. i wasn’t really paying attention because i was so engrossed in trying not to be sad that i bumped into the thing. i had to smile because the one angel that fell off had one simple thing written on it that i noticed only after i had picked it up and started to put it back. it read, dad….i choose to believe he was giving me a sign that he really is ok.
    i am sad because of course i miss my dad but i’m happy that life is no longer such a struggle for him. i was looking through some of his emails and came across his last one to me. it makes me think he knew it was almost time to go….”upon the earth we dance not long, but when we leave, remains our song.” i remember thinking whatever happens, he knows he will be ok. and really, that’s what he would want us to believe and know in our hearts. this next email i am so happy i saved, because it says to me that wherever he is, dad is ok and probably saddened by our grief.
    goodnight my lovely and loving nursey daughter. chin up and don't worry your pretty head about me any more than you have to do. i'll be alright...and if not, well i've lived a pretty full life and sooner or later we all have to pay the price. i love you, your husband, kids, puppy, rufus & chipper and all the ships at sea.

    we love you too dad……

    by martha crowninshield o’brien
    for dads memorial service
    november 30, 2005

  14. by   Blackcat99
    Thanks for sharing about your dad too.:angel2: I know there will never be another person in my life whom I will love as much as I loved my Dad.